Friday, July 8, 2016

Pregnancy and ME/CFS

"Pregnancy and ME/CFS"
By Peggy Rosati Allen, MS, CNM, WHNP

Thursday, July 7, 2016

How to get rid of a disease.....


In 1954, the government redefined polio. I wrote about this other little detail of history that has been widely overlooked in my article "Polio Wasn't Vanquished, It Was Redefined."11 Dr. Greenberg explained this classic example of government sleight of hand…

In order to qualify for classification as paralytic poliomyelitis, the patient had to exhibit paralytic symptoms for at least 60 days after the onset of the disease. Prior to 1954, the patient had to exhibit paralytic symptoms for only 24 hours. Laboratory confirmation and the presence of residual paralysis were not required. After 1954, residual paralysis was determined 10 to 20 days and again 50 to 70 days after the onset of the disease. This change in definition meant that in 1955 we started reporting a new disease, namely, paralytic poliomyelitis with a longer lasting paralysis.12

* * *
And three decades later, they defined Myalgic Encephalomyelitis out of existence by changing the name to Chronic Fatigue Syndrome.
As Dr. Dowsett noted, when they changed the name, all research and knowledge about ME "disappeared" -- the connection was lost and we were persuaded that we had a new disease about which nothing was known, rather than that we had an old disease with decades of research.

Tuesday, July 5, 2016

Millions Missing Round 2, Sept. 27

Join us for #MillionsMissing Round 2 this September 27th.
View this email in your browser

Announcing #MillionsMissing Round 2


On May 25th, you took to the streets in 13 cities around the world. You helped us trend the #MillionsMissing hashtag. Together, we made history.

This September 27th, we want to get louder, bigger, stronger. More cities, more mobilization, more press coverage. Will you join us?

STEP #1: Fill out this form

STEP #2: Join an organizing call
I want to support a protest in my area!
Copyright © 2016 The Myalgic Encephalomyelitis Action Network, All rights reserved. 
You are receiving this email because you are a member of #MEAction. 

Our mailing address is: 
The Myalgic Encephalomyelitis Action Network
PO Box 1248
PrincetonNJ  08542

Monday, June 20, 2016

Myelitis illnesses

Daniel Wilson, professor of history, is quoted extensively in an article about the history of polio and its impact on the country.
Patients "should think about what they can do in a day as a line, DeMayo said.  The goal is to work up to that line, but not past it....  They end up really getting into a situation where they overdo it and cause increased pain and weakness and then they may have a period where they just can't function and then they have to rest.  Then they get frustrated with their level of inactivity (while) resting," he said.  "A lot of times it's an issue of just being smart and budgeting how you do things and what you do in order to get the most done during the day." 
... "The best thing you can do," Nick Hovemeyer added, "is when you feel your legs getting weak, rest.  Sit down and rest.  Stop what you're doing.  And that helps."
The same applies to myalgic encephalomyelitis.  Do Not Pass The Line.
The article also quotes Dr. Bruno.

Monday, June 13, 2016

RIP: Jodi Lyn Bassett



BASSETT (Jodi Lyn):
Our darling, beautiful Jodi, left us on June 11, at home, with her
family beside her.
She was a talented artist, author and HFME activist. She was the most
amazing, caring, intelligent, and funny person and we will miss her
always. Her beautiful spirit is now flying free. May the winds of love

blow softly And whisper for you to hear That we will always love you
And forever keep you near.
All our love Mum, Dad, Claire Dan and Leila, Mark Betty and Reece.

Wednesday, May 18, 2016

CFSAC Comments, Terri Wilder | Occupy CFS

"My name is Terri Wilder and I don't want my tombstone to say I died of government neglect."
* * *
We're ALL dying of government neglect.  They've thrown billions of dollars at cancer -- 200 times as much as we get -- with the result that some forms of cancer have a nearly 100% cure rate.  We have a ZERO cure rate.
And despite the fact that virtually no useful research has been done to produce a treatment, if we don't get cured and go back to work, the official reason is that we're "too lazy to work" rather than that there's no treatment that would get us well enough to return to work.

Pat Blankenship, 1949-2016, Rest, dear friend

"The physical symptoms can only make you sick or dead. But isolation makes you miserable every hour of your day. It never ends."  -- Pat's own words

Thursday, May 12, 2016


"They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD." - Nancy Klimas, M.D., Miami Herald, March 24, 2009.

Stop the verbal abuse -- educate doctors that it's real, it's serious, it's not psychological.
ME/CFS is NOT a 'minor disease'.

The disability rates among ME/CFS patients are similar to those of people with multiple sclerosis, lupus, rheumatoid arthritis, heart disease and other equally serious diseases. Some patients endure years of being virtually home-bound or even bed-ridden because of ME/CFS.

Researchers at DePaul University estimate that every year ME/CFS costs the U.S. economy $17-24 billion*. Its prevalence, economic effect, disabling impact and chronicity make ME/CFS one of the most economically burdensome conditions of our time.
"ME/CFS is actually more debilitating than most other medical problems in the world, including patients undergoing chemotherapy and HIV patients (until about 2 weeks before death)." Canadian ME/CFS Consensus

"Research has shown that ME/CFS has been found to be more disabling than MS, heart disease, virtually all types of cancer, patients undergoing chemotherapy or hemodyalisis." Hooper and Marshall

"My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my ME/C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses [HIV and ME/CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V." Dr. Nancy Klimas

Slightly Alive: For May 12, 2016: ME is not a "mysterious" disease.

The whole point of this blog is that NIH and CDC behave as if we knew nothing about ME.  That is not true.  It is not so mysterious.  You do not have to start from scratch as you slowly turn to investigate it again.  Bethesda and Atlanta may have been asleep, but the research community was awake.
* * *
Dr. Dowsett noted that in 1988, when the CDC changed the name from ME to CFS, all knowledge about ME and its connection to polio was lost.  And CDC wanted it that way.
Fortunately, they couldn't erase the memory banks of older doctors, like Dr. Dowsett, who'd already learned that Myalgic Encephalomyelitis and Poliomyelitis are related.